My Son Has a Rare Genetic Disorder and a Local Hiking Club Gave Him Confidence to Get Stronger

Although Portland, Oregon, mom Brandi Adams was intrigued when she learned that some of her friends had joined a hiking club for families with young children, it took her nine months of lurking on the Hike It Baby Facebook page to work up the courage to attend a walk in person.

Brandi's son Gavin has Joubert syndrome, a rare genetic disorder that affects the part of the brain that controls muscles and posture. At three years old, Gavin was still crawling to get around. Joubert syndrome affect patients differently depending on what end of the spectrum they're on. Some children have abnormal eye movements, or trouble with speech and walking, while others are wheelchair-bound, unable to breathe or eat on their own. When Gavin was diagnosed at 2 months old, "doctors didn't really give us any vision of what our future was," says Brandi.

Yanna Bennett

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Gavin was three-and-a-half before he could stand on two feet with the help of a walker. Brandi felt isolated, living vicariously through photos other families shared on social media. "I didn't know any other families with special needs children and rarely ever took Gavin out in his walker because I didn't want people staring," she recalls.

She was anxious and nervous about what other people would think about a kid with a walker hiking — a weird concept, she thought. She wanted to protect her son from feeling the hot gaze of so much negative attention. If they joined the hiking club, she reasoned, they'd stick out like a sore thumb.

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But when the group announced a "bear hunt" in 2015, the children's hospital nurse knew she had to forgo her own pride to give Gavin a chance at enjoying the great outdoors. The event, based on the book We're Going on a Bear Huntby Michael Rosen, centered around looking for stuffed bears that organizers had hidden in the woods ahead of time. Gavin had already learned the corresponding song in school. Brandi emailed to inquire about accessibility, and was pleasantly surprised when the group lead, Ashley, messaged back immediately.

Brandi and Gavin

Yanna Bennett

Brandi's fears never came to fruition. On the day of the hike, her fellow parents were friendly and welcoming. Ashley remembered them, and had placed bears on two separate trails to ensure that the little boy with a walker could participate. "The kids of course had a lot of questions and looked at him a lot [but] Gavin was really enthralled by the whole situation. He loved story time," says Brandi.

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Shortly after that, Hike It Baby founder Shanti Hodges, who has a nephew with Down's syndrome, contacted Brandi with a request: Would she start leading all-access hikes in Portland? Unsure at first, Brandi began with a few trial runs in 2015. Last year, she committed to hosting monthly accessible events, including a Pumpkin Hunt in October and an ornament-and-snowflake search in December. As an organization, Hike It Baby has grown to 300 branches across the U.S. and nine other countries.

Shanti Hodges

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"The key is that hikes are not Down's syndrome events or Joubert syndrome events," says Shanti. "We try to gather all types of families so children learn that all children are the same. Nature is a great equalizer. Family configuration is not a factor, either. Moms, dads, grannies, and uncles are welcome."

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Simplicity is one of the keys to the group's success. Membership is $10 per family per year (the money goes towards things like maintaining the website) and no RSVP or hiking gear is required. Hike leads do their utmost to create respectable environment. "We don't talk politics, vaccines, breastfeeding, or bottle feeding," says Shanti.

Brandi says the group has played an integral part of in her son's success as well as her own. She's bolstered by the amazing special needs parents she has met there, including one mom who doesn't let her son's dependence an oxygen tank stop them from climbing mountains together. Another favorite moment happened last year was when four different kids with walkers showed up for the same hike: "I think each one of those children had never seen another kid with a walker. They always thought they were different," she says.

Gavin, now 5, completed his first independent challenge last fall. "He hiked 13 miles on his own two feet without a walker or stroller," says Brandi. "He's getting stronger every day."